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parenting a person with autism

The morning before the last day and, right on cue, the buds are out for the first time this spring.

He won’t be 22 for a few more days, but because of the April break tomorrow is his last day in the School District. The week is devoted to community trips to his favorite places – movies, zoos, museums. The staff, like us, seems a little bewildered that this moment has finally arrived. It’s hard to focus on the administrative details and preparation for the next environment; we are grateful to have found a place that not only has meaningful employment waiting for him, but people who are looking forward to his arrival. We may have worked for this outcome but it is still something of a miracle to all of us.

Following the instructions.

There will be challenges, but they are not the kind we can see from here. I see glimmers of anxiety. Last night I asked him to fill out the simple application form for the job training program. he was busy drawing and cast me a sidelong glance, saying, “I’m not very cheery about this.” He complained while filling it out but, as ever, was meticulous about it. Earlier in the day he was putting together a truck given to him by a thoughtful classmate. I watched him pore over the instructions – how many people do you know who follow the instructions from the outset of an assembly project? These gifts, these skills, are integral to his thinking. They will serve him well, always, and will help him make a place for himself in the world.

A boy comes home from a long day at Kindergarten, climbs into his mother’s lap and both fall asleep in the dwindling winter afternoon. That was today. Except the boy is 19 and he’s a Kindergarten teacher’s assistant. Still, his 5-foot-7 body folds into my lap as easily as a toddler’s, his head fits neatly in the nape of my neck and his sleep is as deep and blissful as an infant. When I close my eyes I literally cannot tell the difference in age, so complete is his ability to shift his weight and meld his body to mine. I have waited for this phase to end for roughly 18 years and miraculously, disconcertingly, it never does.

As we navigate the transition to adulthood, such moments become more poignant. He’s making it harder for me to let go by being such a perfect man-child.

Over the Christmas break I had to run to the Post Office one morning – I was gone for 20 minutes, tops. When I returned I was met by a flummoxed husband and my boy pronounced, very matter-of-factly: “Mom, Dad and I find life very difficult without you!” There was a medication question – I had forgotten to leave out the morning pills. If I had been out of town they no doubt would have figured it out easily, but my unplanned outing sent them into a tailspin and no one even thought to call me on my mobile. I suppose I shouldn’t be surprised that I’ve become such a fabulous enabler. The rewards of caring for this family are so epic that even when things are horrifying and dysfunctional they still make a good story.

After waking, tea with Panda. What part of me would ever want to miss tea time?

Consequently, I’m doing a lousy job at making myself obsolete. As other women my age with kids the same ages as mine plan their next act I find myself trying to perfect the at-home game – which, under normal circumstances I was never very good at. My husband is a far better housekeeper than I am but he works and travels a lot – after 21 years at home I think I’m finally picking up a few of his good habits, but it really has taken that long. The good news is I can cook and I’m well-suited to dealing with the monkey wrenches autism keeps hurling into our lives. I’m grateful that my husband’s work allows me to focus on our family. Sometimes I allow myself to wonder what would have happened if I hadn’t been able to stay home. My boy would have survived but probably not thrived and I would likely have succumbed to some rural suburban mother madness (which is still possible). Maybe I would have revived my old career instead of trying to carve a new one out of the Internet, but even as I try to create new opportunities I can’t really bring myself to take my eye off that autism ball. Like the shoe that periodically came flying from the back of the minivan in years past, it has a tendency to smack me in the back of the head if I turn away.

So, yes, I am having trouble outsourcing my job so that my man-boy can be more independent, partly because he keeps me warm but also because I’m avoiding thinking about what else I should be doing. Even as I try to write on other topics, I am emailing job coaches and setting up meetings to create community networks for adults with disabilities. I’m tracking legislation and figuring out SSDI. I know what I do is making his life better, but I’m just not sure I’m ready to make his life better without me. I want to have it both ways, and I’m going to figure out a way to accomplish that. Later, after tea time, maybe.